Brain tumour: more tailored treatments for children like Iona

Every year in the UK, around 400 children up to the age of 14 receive a devastating diagnosis of a brain tumour. Many face prolonged and gruelling treatment with surgery, chemotherapy or radiotherapy. While treatment can save their lives, it can also cause serious, long-term side effects, so it’s important to get the balance right for their future health and quality of life.

Iona Atkins is a very charismatic and confident young girl. When was just five she was diagnosed with a brain tumour. She went through 10 hours of surgery which left her with some brain damage and without the ability to produce important hormones so has to take daily medications as a result.

Only a year later following her initial ordeal, the tumour grew back and Iona went on to endure a six week course of daily radiotherapy. She lost large patches of hair, suffered extreme tiredness and painful radiation burns. Due to the radiotherapy she has problems with perception and memory and the brain tumour has caused problems with eating, controlling temperature and sleeping.

A new research project into childhood brain tumour is being led by Professor Andrew Peet, of the University of Birmingham. He believes this could save the lives of children with the most aggressive tumours and spare those with less severe illness from unnecessary treatments.

The vital research is being jointly funded by us, children's charity Action Medical Research, and The Brain Tumour Charity. £194,548 has been awarded over three years to fund the work to develop a way to tailor treatment more closely to the needs of each individual child diagnosed with a brain tumour.

The researchers working on this project have world-leading expertise in using imaging techniques such as MRI scans to obtain information about childhood cancers. Their work focuses in particular on identifying the chemical make-up of tumours. Professor Peet has over 100 publications to his name, and has led both UK and European groups. He was awarded a Research Professorship by the National Institute for Health Research in 2013.

“A diagnosis of a brain tumour is devastating – not just for the child himself, or herself, but for the whole family,” explains Professor Peet. “Going through treatment is really tough. It completely changes children’s lives over months or even years.”

Sadly, around one in every four children diagnosed with a brain tumour lose their lives within five years, making brain tumours the most deadly of all childhood cancers.

“Children who make it through treatment remain at risk of experiencing long-term problems,” continues Professor Peet. “They can have difficulties with movement, balance and coordination, and with learning, hearing and vision, for example. This can be due to pre-existing problems and the tumour itself – but it can also be a side effect of treatment.”

With so much at stake, there is a need to ensure all children with brain tumours get the best possible treatment and information for them and their families.

“Children with a brain tumour have MRI scans routinely when they are first diagnosed,” explains Professor Peet. “The scans provide highly detailed pictures of tumours inside the brain. We are developing a way to get even more from MRI scans, using a sophisticated technique that provides information on the chemical make-up of tumours. We believe this information could be of great value, because it could enable us to predict how aggressive each child’s tumour is likely to be much sooner and more accurately.”

It is hoped that, as a result, children with the most aggressive tumours could immediately be given the most intensive treatment, which could boost their chances of survival. Children whose tumours are not so life-threatening could be given less intensive treatment, sparing them from some of the lifelong disabilities that treatment can cause.

Our Research Evaluation Manager, Dr Caroline Johnston says: "There is clearly a vital need for this research to help provide more information on the chemical make-up of brain tumours in children, the most deadly of all childhood cancers. We are proud to be jointly funding this project with The Brain Tumour Charity which will in the future, we hope, enable more accurate prognosis and better treatments.”

Now 11, Iona has just started secondary school, however, every six months Iona has a scan to monitor her brain tumour, which started growing again in 2011. She's very courageous and brave, a girl who rarely complains and faces things head on. A further scan is due in February 2014 and at some point surgery will be needed to treat the re-growth of the tumour.

Iona’s mum, Ann, said: “Iona has been through so much treatment which has left her with long-term learning difficulties including perception and memory problems. If more can be done to tailor treatments it could mean some children receive less treatment, reducing the risk of these long-term side effects. We were pleased to hear about the partnership between The Brain Tumour Charity and Action Medical Research to fund this vital research, which could help more families like us in future.”